Friday, December 28, 2012

Merry Christmas!

Twas a Christmas 'sans Daddy' but all turned out well.
Spending it with the Bunton's gave us some stories to tell.

Considered both family and friends they're so great,
We had presents, fun and the turkey got ate!

Lisa, Stephen, Graeme, Sara and Francesca came,
Two flew from Van, two from Toronto and Spain!  (or was it Norway...  well, Norway doesn't rhyme...)

Summer and I rounded out the crowd,
And an early Christmas morning was totally allowed.  (Sorry L & S!)

Hours of presents, more food and fun.
I even took in a Christmas Day run.

Boxing Day brought the whole Standen Clan,
A fun lunch visit and then they all ran.

We all missed Sum's Daddy, but we knew he was OK.
Even though we couldn't spend with him the day.

Merry Christmas!

Friday, December 21, 2012

Ready or Not, Here Comes Santa!

We're winding down the final week of school before the Christmas Break.  Yesterday was Summer's Christmas Concert at her school.  It was quite entertaining, if not a little lengthy.  The choir was the last act, so sneaking out before the end of the two hour show was definitely not an option.

We are capping off the week with a sleep over with Sum's bestie before we begin our week of Christmas Festivities with the Bunton clan. 

I didn't manage to get all my Christmas cards done, but I did get the shopping completed and I think I am ready for the big guy.  Summer and I put up a small three foot Christmas tree. It turned out to be a really good idea because she decided that she would put one decoration on each day.  If I put the big tree up, it would have taken us until 2014 to get it decorated. 

I will post pictures from the concert - like everything else, I am behind with downloading the camera...

Friday, December 14, 2012

With Teddybear

This morning Summer was obsessed with having her Teddybear under her shirt like a baby.  As we are leaving the house she told me to hurry, she did not want to be late for work.  OK.  This continued all the way to school.  On the way she informed me that her husband is sitting in the front seat.  I ascertained that his name is Joseph.  OK, so you know where this is going.  The Christmas Story is alive and well at our house!

Bridgette at her before and after program had a good giggle over it and I hope the rest of the teachers are in the same humour today.

Some days, you just never know what you are going to get.

Saturday, December 8, 2012

Haley Fest 2012

Haley Fest kicks off the Christmas season in our City.  Summer's school sang on Tuesday evening at the Capitol Centre.

Thursday, December 6, 2012

When Normal is Extraordinary

Our last appointment.  Tuesday morning we headed to Sunnybrook.  Our second day in a row in rush hour traffic, I wondered to myself how others cope.  Having anticipated the time well, we arrived with 15 minutes to spare.  We parked, entered the lobby and were delighted to see that the Sunnybrook Foundation  had installed Summer's photo at the top of a panel in their donor wall. 

We snapped a few photos, grabbed a coffee and headed up to the NICU Follow Up Clinic. 

It is always wonderful to be greeted by familiar faces.  Summer told me earlier that she could not wait to see Dr. Church.  She was the first we got to visit with and also Maureen and Pat.  The Psychologist introduced himself and they let me know that Summer would be assessed and I was not allowed to watch.  During her assessment (which I think was in excess of an hour), I sat with a volunteer and went through a survey and information gathering exercise.  I was a little concerned that Summer was a bit tired and may not perform to her potential.

When the assessment team emerged, we had a debrief while Summer played with the volunteer.  They were sure to tell me all the funny things she said - good blog material - but I did not write it down...

We will receive a full report, but in a nutshell, Summer scored within normal ranges in all categories.  She scored low-average in categorization, puzzles and cause and effect.  That said we NEVER leave the Follow Up Clinic with no homework.  So we will work on the suggestions over the next while.

The team seemed pretty pleased with her.  This is her last formal assessment at Sunnybrook, unless we need their help or advocacy. 

It's been quite a ride and we have had the great fortune of being a part of the Sunnybrook (formerly Women's College) NICU family.  Their passion and dedication is reflected in the progress and outcomes of kids like Summer.

Wednesday, December 5, 2012

Appointment Update

There seems to be so much happening so little time to write about it.  So, here is the Reader's Digest version of the last couple of weeks:

1.  Dearest Friend Heather Graduates (finally!  - It would have taken me twice the amount of time to get a degree in English Lit.... )  We attended her party in Uxbridge that was complete with delicious dinner, beautiful music and a video greeting from Chef Michael Smith.  (Heather is also a foodie blogger Nosh With Nash)  We were honoured to be among her guests of family, friends and former bosses.  We had lots of laughs and even a few tears.  She's one amazing woman.

Summer and Kirstie, Heather's Daugther

2.  Summer had her MRI on Saturday.  She layed still for the 75 minute scan and did not fuss once.  I was very proud of her.  I was quite worried about this scan for a variety of reasons.  Firstly, we are always wondering if this will be the time the Dr. recommends a shunt revision.  That alone is big.  Secondly, this time he asked that the head, neck AND spine be scanned.  I know they were 'looking for swelling', but you never know what else they will find.  So, of course, given that we had discussed some concerns around the space at the base of her cerebellum in May, my mind also went to a variety 'what ifs'.    I am very happy to report that there was NO change in her MRI image from May.  So, although we are constantly reminded what shunt failure symptoms present as, we are much relieved, that for now, it is status quo.  (This information we received at our Monday follow up appointment, so I appologize for getting a little out of sequence.)

3. After Summer's scan, we headed to the German Christmas Festival in the Distillary district, where we met up with cousins Graeme and Sara, and Sara's father Allan.  It was cold. Summer has a very cute connection with Sara and as usual, was to her like a magnet. 

4.  On Sunday, we took in a movie with our very close friends, Matthew, Eric, Emilie and Elise Miller. The kids had a great time and it was nice to have a quick visit.
5.  Monday was another day focussed on appointments.  Summer had the Neurosurgery Follow Up clinic.  See above, re: MRI results.  I was also able to schedule her eye appointment from January to Monday afternoon.  I was so grateful to reduce my trips to Sick Kids by 1.  We were even in and out of Eye Clinic in a record 35 minutes.  Unheard of really.  Between the two appointments we took in a lunch at the Kebab House with Dear friend Heather - AKA the Graduate :-) and then we got to hang out in her office at Sick Kids for a bit.  She introduced Summer to Miffy on her computer - the Dutch equivalent to Hello Kitty.  Summer was delighted.  I wonder what the IT guys at Sick Kids were thinking....  "who the heck is accessing the Miffy site??"

6.  Tuesday - another appointment....  I will save for the next post.